Amy Sequenzia
Amy Sequenzia is a prominent Autistic and Disabled Rights activist from the USA. Short Bio "Imagine a world where you had to prove you knew your own mind even to get a cup of coffee, where it was generally assumed that you could have no thoughts of your own, so if you did express your thoughts, it must be some trick. What would you do? Would you give up, or demand to be heard?" So begins the blurb for "Typed Words, Loud Voices" an anthology of writings from non-speaking Autistic activists, including anthology editor Amy Sequenzia. Sequenzia's work as a Disability rights activist has served as a powerful antidote to the internalised ableism of more prominent Autistic activists like Temple Grandin and John Elder Robison. The Autistic community has fought major battles in the decades since Autism was first clinically studied, against overwhelming pressure to split the community into clusters based on ableist judgments about how well Autistic individuals conform to oppressive standards of 'functionality'. Functioning labels are weaponised to deny the humanity of Autistic people deemed "low-functioning", while Autistic people who are deemed "high-functioning" have their disability erased or never even recognised, left to cope with chronic anxiety and depression long into our adult lives on top of significantly higher rates of gender dysphoria and PTSD. This divide and conquer approach is particularly insidious because it enables the entire community to be silenced, where those deemed "high-functioning" are painted as being 'less Autistic' and hence unable to advocate on behalf of the whole community. This has allowed non-Autistic parents and clinicians to become the loudest voices in the Autistic community, directing funding towards researching ways to purge us from the gene pool rather than empowering us to live as we are. Amy Sequenzia's empassioned activism has played a vital role in tearing down the fallacy of functioning labels and her staunch opposition to the ableist and oppressive approaches modern psychiatry takes towards Autistic people - physically forcing us to conform against our will to social norms that harm us, remove our bodily autonomy and leave us vulnerable to further abuse - has helped the community fight back against the pernicious influence of this divide and conquer approach. Sequenzia was labelled "low-functioning" throughout her childhood and still today, she is both non-speaking and multiply disabled, with epilepsy as one of her most severely disabling conditions. Yet, she has indicated that while she would welcome a cure for her epilepsy (never her Autism, which would amount to 'curing' her identity), Sequenzia has consistently revoked the credence of paternalistic allyship that claims to support Disabled people by looking for cures for disability, rather than looking to cure the ableism and social inaccessibility that is the main source of suffering for Autistic-and-otherwise-Disabled people. Articles On Functioning Labels When Autistics Grade Other Autistics - Ollibean.com "I am one of those autistics who were said to be hopeless. Doctors and “experts” were convinced that I would never make any progress in life, that my parents were better off sending me away so they could have one. The “experts” said I was “too low-functioning to learn”. ... The assessment is incomplete and based on parameters that were created for non-autistics, by non-autistics, not taking into consideration the neurological differences of autistics. This is also true when labeling some autistics “high-functioning” only because they look like what is said to be “normal” and can act more like non- autistics. They are trapped, and any autistic trait they show, any extra help they might need, is met with skeptical looks and scorn. They learn to doubt themselves and they are told to get over it. Most autistics I know dislike the functioning labels. They know they are pointless and useless. Functioning labels get in the way of assessing needed supports and they create a culture of presumption of incompetence. Not to mention the lack of understanding and lack of empathy directed at us." "Having to educate neurotypicals on what functioning labels mean can be tiring but I have seen progress. Some of them understand our arguments and are very supportive. I do see a more serious problem when autistics themselves use this classification, usually an autistic calling himself “high-functioning”. I think I know why parents of young children need to use the “high-functioning” label. They want reassurance that their children can “overcome” certain “issues”. Or maybe the child does not experience some issues that make everyday things more challenging. Parents don’t want this child to be seen as “so disabled”. I wish they could understand autism better." "When people in my own community use the functioning labels, it feels like they want to feel superior by distancing themselves from us, the ones with more obvious needs. Worse, they buy into the neurotypical grading of autistics. They become, in a way, the followers. I am autistic and in autistic issues I want to lead, no matter how neurotypicals want to grade me. “If you judge a fish by its ability to climb a tree…” Maybe some of us are fish and you need to meet us in our environment, where we have the supports we need to succeed, where you can see our value." On Disabled Pride Celebrating My Life - Ollibean.com edits made here for readability Reflecting on comments made by John Elder Robison (JER), who Sequenzia quotes as saying: “We may have gifts too, but disability remains the basis for diagnosis. Some autistic people are rendered non-speaking by their condition, and I can’t imagine who would celebrate that. Others live with significant medical complications like epilepsy. I’ve yet to meet anyone who celebrates that either.” Sequenzia responds emphatically to the contrary, as both a non-speaking Autistic and a person with epilepsy: "I commented that JER does not have to “imagine”. I am here, I celebrate being non-speaking, I celebrate my epileptic life (which is different from celebrating a seizure). I celebrate my Autistic, Disabled life. It seems illogical, but it is not, and I will explain why. It is about assumptions, based on what is considered “normal”, how we are supposed to feel about things considered “difficult to live with”. I am not able to speak, and I don’t want to speak. I celebrate being non-speaking. I celebrate being a good listener, when most speaking people interrupt each other, not always listening – really listening – to what the conversation partner has to say. I celebrate being an activist for the right of every single person to be heard, no matter which method they use to communicate. I love my speaking friends, including my best friend, but sometimes they are exhausting, with all the talk. I still celebrate their lives, noise and all, as I celebrate my quiet-but-listening (not silent, I am loud in my own way) life. I do love you, speaking friends! I am not tired of you." Sequenzia expands upon this premise, particularly indicating the flaw in JER's logic, in that he assumes that non-speaking Autistics would naturally regret their inability to speak, rather than regret the ableist way that society neglects them for their differences in communication: "JER chose his words poorly, maybe he meant that he can’t imagine people celebrating being non-speaking because it is harder for us to be understood. It is hard to have most of the world ignoring us, not allowing us time to communicate what we want to convey. This is not because we are non-speaking, it is because most people in the speaking majority are ableist, and because “normalization” leads the list of false assumptions about how we feel, being non-speaking." Category:Activists Category:Autism Spectrum Category:Neurodivergent People Category:Neurodiversity Category:Disability Category:Disabled Rights